Literature DB >> 25894235

Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis.

Christian Lenk1, Debora Frommeld.   

Abstract

Genetic predispositions often concern not only individual persons, but also other family members. Advances in the development of genetic tests lead to a growing number of genetic diagnoses in medical practice and to an increasing importance of genetic counseling. In the present article, a number of ethical foundations and preconditions for this issue are discussed. Four different models for the handling of genetic information are presented and analyzed including a discussion of practical implications. The different models' ranges of content reach from a strictly autonomous position over self-governed arrangements in the practice of genetic counseling up to the involvement of official bodies and committees. The different models show a number of elements which seem to be very useful for the handling of genetic data in families from an ethical perspective. In contrast, the limitations of the standard medical attempt regarding confidentiality and personal autonomy in the context of genetic information in the family are described. Finally, recommendations for further ethical research and the development of genetic counseling in families are given.

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Year:  2015        PMID: 25894235     DOI: 10.1007/s11019-015-9638-5

Source DB:  PubMed          Journal:  Med Health Care Philos        ISSN: 1386-7423


  11 in total

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Authors:  T Takala; M Häyry
Journal:  J Med Philos       Date:  2000-02

Review 2.  Genetic information: a joint account?

Authors:  Michael Parker; Anneke M Lucassen
Journal:  BMJ       Date:  2004-07-17

3.  Is there a duty to share genetic information?

Authors:  S M Liao
Journal:  J Med Ethics       Date:  2009-05       Impact factor: 2.903

4.  Effect of knowledge of APOE genotype on subjective and objective memory performance in healthy older adults.

Authors:  Tara T Lineweaver; Mark W Bondi; Douglas Galasko; David P Salmon
Journal:  Am J Psychiatry       Date:  2014-02       Impact factor: 18.112

5.  Genetic links, family ties, and social bonds: rights and responsibilities in the face of genetic knowledge.

Authors:  R Rhodes
Journal:  J Med Philos       Date:  1998-02

6.  The family in family practice: is it a reality?

Authors:  J H Medalie; S J Zyzanski; D Langa; K C Stange
Journal:  J Fam Pract       Date:  1998-05       Impact factor: 0.493

7.  Who is the family doctor? Relating primary care to family care.

Authors:  P J Murata; R L Kane
Journal:  J Fam Pract       Date:  1989-09       Impact factor: 0.493

Review 8.  The family covenant and genetic testing.

Authors:  D J Doukas; J W Berg
Journal:  Am J Bioeth       Date:  2001       Impact factor: 11.229

9.  "You're one of us now": young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP).

Authors:  Rony E Duncan; Lynn Gillam; Julian Savulescu; Robert Williamson; John G Rogers; Martin B Delatycki
Journal:  Am J Med Genet C Semin Med Genet       Date:  2008-02-15       Impact factor: 3.908

10.  Improving family communication after a new genetic diagnosis: a randomised controlled trial of a genetic counselling intervention.

Authors:  Jan M Hodgson; Sylvia A Metcalfe; Maryanne Aitken; Susan M Donath; Clara L Gaff; Ingrid M Winship; Martin B Delatycki; Loane L C Skene; Belinda J McClaren; Jean L Paul; Jane L Halliday
Journal:  BMC Med Genet       Date:  2014-03-14       Impact factor: 2.103

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  2 in total

1.  Genetic diseases and information to relatives: practical and ethical issues for professionals after introduction of a legal framework in France.

Authors:  Diane d'Audiffret Van Haecke; Sandrine de Montgolfier
Journal:  Eur J Hum Genet       Date:  2018-02-27       Impact factor: 4.246

2.  Rethinking the ethical approach to health information management through narration: pertinence of Ricœur's 'little ethics'.

Authors:  Corine Mouton Dorey
Journal:  Med Health Care Philos       Date:  2016-12
  2 in total

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